Daniel’s Story

By Fran Quigley

It was after dark on the evening in September of 2000 when Joe Mamlin was making after-hours visits to some of his patients at Moi Teaching and Referral Hospital in Eldoret, Kenya. The wards he walked through were made up of several open rooms with a half-dozen small cot-like beds, most of which contained two patients lying head-to-feet of their bed partners. Except for the dimly lit central corridor, the wards were completely dark. Mosquitoes and flies swarmed on the patients in the equatorial night.

Wards at Moi Hospital were organized into three bays on each side of the corridor, with six to eight beds in each bay. Bay 3 is farthest from the nursing station and closest to the stench from the clogged and broken flush toilets. This was where the hospital put all its HIV patients. Like an identical area in the women’s wards, Bay 3’s patients were mostly young people, ages 18 to 35. Most were parents of young children. All were expected to die within a few weeks.

This grim scene in the western highlands of Kenya was being replicated throughout Africa. By this time, the African AIDS crisis was already in full force. According to United Nations estimates, 23 million people in sub-Saharan Africa were infected with HIV/AIDS. During the year 2000, 2.4 million Africans died from the disease and nearly 4 million were newly infected with it. In many parts of Africa, entire villages had been so ravaged by AIDS that they were populated almost entirely by old people and orphaned children.

When Mamlin arrived in Kenya three months before, the 66-year-old physician was looking to put the finishing touches on a career that had made him something of a local legend in Indianapolis. As a professor of medicine at Indiana University and as chief of medicine at Indianapolis’ Wishard Memorial Hospital, Mamlin had spearheaded the creation of a groundbreaking neighborhood-centered health care system for the poor. Before that, he had spent several years as a Peace Corps volunteer physician in Afghanistan with his wife Sarah Ellen and their three children, bringing up a new medical school in Jalalabad and treating patients in brutal conditions. White-haired, well over six feet tall and a life-long student of philosophy, Mamlin is described by his colleague Dr. Bob Einterz as an “LBJ-type” figure. “Joe has had this mystique about him from the time he was chief resident at Wishard,” Einterz says. “It comes from his combination of insatiable optimism, an enormous capacity to believe he is right, and the quintessential silver tongue—a remarkable ability to persuade others that his vision is the correct one.”​Mamlin was no stranger to Kenya. In 1992 and 1993, he had served a term as the field director of Indiana University’s partnership with Moi University School of Medicine. In the summer of 2000, Mamlin retired from his Indiana duties and he and Sarah Ellen agreed that another year’s term in Kenya would be the perfect spring-board to full-time retirement.

But things had changed since Mamlin was last in Africa. Eight years before, Mamlin would see about 80 patients die on these hospital wards each year, most of them elderly. That many were dying each month now, and the dead patients were much younger. Mamlin’s immediate predecessor as Indiana team leader in Eldoret was young pediatrician and internist John Sidle, who had arrived in Kenya two years earlier full of enthusiasm for his African experience. Like the iconic figure of the worn-out Father Time at the end of each year, Sidle departed Kenya in bad shape. Devastated by the daily ordeal of watching his AIDS patients die untreated, Sidle was depressed and struggling with alcohol addiction. He left as Mamlin arrived, and vowed never to return to Africa.

After just a few weeks back in Kenya, Mamlin knew how Sidle felt. “I find this to be the most difficult task of my entire career,” he admitted. “It is easy to sit in a conference room and say it is not wise to provide treatment here. But it’s a lot harder to be here and look into these people’s eyes and not be doing anything.” Einterz recalls those days as the only ones he ever knew Mamlin as being without optimism. The leader of Indiana’s medical community was “in anguish,” Einterz says.

That evening, Mamlin turned out of the lit corridor and into the darkened Bay 3. As his eyes adjusted, he recognized Moi University medical student Bernard Olayo sitting by one of the patient’s beds, spoon-feeding a gaunt young man who Mamlin did not recognize. It was long past the hour when medical students usually left the hospital, so Mamlin asked why Olayo was there. Olayo gestured toward the patient he was feeding, and introduced Joe Mamlin to his friend and classmate, fifth-year medical student Daniel Ochieng.

* * *

Daniel Ochieng grew up in the western Kenya village of Siaya, in Luhya tribe territory near the city of Kisumu. His father, a schoolteacher, died when Daniel was just five years old, so his mother Leonida raised Daniel and his younger sister alone on their small farm.“When I was in primary school, I wanted to be a teacher, because in the village, the teachers were revered and were the only ones with a consistent income,” Ochieng said. But when he began attending secondary school, Ochieng discovered he had a talent for sciences. During his final year of secondary school, he scored well enough on the nationwide medicine exam, a challenging combination of sciences, math and language, to earn one of the coveted 150 spots in medical school open to Kenyan students each year. Ochieng became the first person in his family to attend university.

His classmate Caroline Kosgei remembered Ochieng as a politically active university student. “I was a social person, vocal in advocacy for student rights,” Ochieng said. But during his fourth year as a medical student, Ochieng’s political advocacy and plans to become a surgeon began to be affected by his deteriorating health. He started having chest pains and losing weight. He struggled to fight off repeated infections, including painful oral thrush, which coated his mouth and throat with a white cottony substance. Ultimately he was diagnosed with tuberculosis and hospitalized, where a test confirmed that he was HIV-positive.

As a medical student, Ocheing knew enough about HIV to be scared. “When we were doing rounds at the hospital, if one of the patients was HIV-positive, you knew they were definitely going to die,” he said. Ocheing did not tell his family about his diagnosis, but he realized his professors and fellow medical students could likely guess his disease from his marked weight loss, constant diarrhea and inability to fight off infections. Caroline Kosgei remembered seeing Ocheing brought out of the student hostel in a wheelchair on his way to be admitted to the hospital across the street. “He was so wasted, it was horrible,” she said. “We all went back to our rooms to cry.”

Mamlin later described the Ochieng he saw that night, who had lost a third of his body weight on his way down to a mere 72 pounds, as a “breathing skeleton.” Physicians consider HIV to have progressed to full-blown AIDS when a patient’s CD4 count, a measure of the white blood cells per microliter of blood, drops to less than 200. Ochieng’s CD4 count was 34. Ochieng’s worried mother rushed to Eldoret to stay at his bedside. He still did not tell her he was HIV-positive, but Ochieng knew enough about the medical reality to make any optimism difficult. “I knew I would die if I did not get help,” he said.

But even four years of African medical school did not give Ocheing much of a clue about what that help could be. Since there had never been a patient on the wards of Moi Teaching and Referral Hospital ever treated with anti-retroviral drugs, Ocheing’s clinical training had never involved the regimen that was proven to save the lives of HIV-positive patients.

In the fall of 2000, anti-retroviral therapy for HIV/AIDS was working wonders in the U.S. and the western world. But the conventional wisdom shared by global health agencies, funders and governments was that treatment in Africa was impossible. The $500-plus per month cost of the drugs was prohibitive for patients and governments in poor countries, not to mention the challenge of administering an exacting daily drug regimen for life in communities with little or no functioning health system.

In 2001, Andrew Natsios, the Bush administration’s chief of the U.S. Agency for International Development (USAID), would tell the House International Relations Committee that it was impossible to provide antiretroviral drug treatment to the millions of Africans infected with HIV. Although Natsios was widely criticized for his statement that African’s inability to tell “Western time” prevented them from being able to adhere to the antiretroviral regimen, more carefully worded concerns justified the fact that virtually no Africans infected with HIV were being administered antiretroviral drugs.

For example, Julian Lambert, senior Africa AIDS specialist with Britain’s Department for International Development, wrote in late 2000 in praise of the success of ARV’s in the West. “However,” Lambert wrote, “The treatment is currently much too expensive to be made widely available in developing countries, and would also require more effective health systems to support patients in following the drug regimes in order to prevent the development of resistance and mutation of the virus.”

Lambert’s view reflected the global health consensus that treatment in Africa would be so haphazard that it would actually worsen the pandemic by creating drug-resistant strains of HIV. As the 20th century came to a close, the word had come down in no uncertain terms: In Africa, it was better to focus anti-AIDS efforts on prevention alone.

* * *

Joe Mamlin had already seen dozens of young Kenyan men and women infected with AIDS waste away and die. He realized that it shouldn’t have mattered that this particular patient, too weak to raise his arms to feed himself, was a medical student. But it did matter. Something about Daniel Ochieng laying next to another patient in the same bed, waiting for death in the dark of Bay 3, challenged all of the well-settled reasons why HIV/AIDS was not being treated in Africa.

Shaken by his encounter in Bay 3, Mamlin left the hospital that night and walked slowly to the house Indiana University rented a half-mile away. By the time he reached his computer and logged into the glacially slow dial-up connection to the internet, Mamlin had made up his mind. He began to compose an email to Einterz, the Indianapolis-based director of the Indiana-Moi partnership. ​By nearly any measure, that partnership was already a remarkable success story. Since 1989, hundreds of Indiana medical students, residents and faculty members had come to Eldoret as part of the program, with at least one full-time Indiana faculty member always on-site for at least a one-year term. Dozens of Kenyan faculty members and students, most on full fellowships or scholarships, had traveled to Indianapolis or to one of the other academic medical institutions like Brown and University of Utah that followed Indiana’s lead into the project. Praise for the program flowed in from faculty, students and international relations experts from both countries. Impoverished Kenyans had been treated, technical and cultural information had been exchanged. Collaborative research had been conducted. Current and future generations of U.S. and Kenyan doctors had forged cross-cultural relationships that have enriched both communities.

Mamlin noted all that in his message to Einterz. But he also wrote that it may be time to put an end to the program. With Kenyans like Ochieng dying by the hundreds each week, the partnership simply could not continue on as before. Indiana University must fully engage in the struggle against HIV/AIDS, Mamlin insisted, or it should fold its tents and go home. Personally, he had no intention of standing by and watching an entire generation of Kenyans die, even from a disease that was considered too expensive and difficult to treat in Africa. Copies remain of some of Mamlin’s email messages from that time, in particular one September exchange that began with a message to Dr. Joe Wheat, the head of the division of infectious diseases at Indiana University School of Medicine. “Joe, I would like for you to consider helping me with a tough problem,” Mamlin began, and then explained Daniel Ochieng’s situation.

“I have seen more HIV in these three months I have been here than all the docs in Indiana combined,” Mamlin wrote. “Yet I have seen no one treated for HIV—we treat the TB, typhoid, pneumonias, etc. and let the retrovirus do its thing—which it does relentlessly.” Mamlin wanted to make Ochieng the first Kenyan HIV patient to be treated with antiretrovirals in the history of the Indiana-Moi partnership and the public wards of Moi Hospital. He asked for Wheat’s help in guiding the regimen and finding the money to do it.

Mamlin shared this request with several of his Indiana colleagues. The reaction was mixed. John Sidle had helped Ochieng with food and medicine while Sidle was in Kenya. “I like Daniel and I would like to help him,” Sidle wrote in reply to Mamlin’s message, offering to try to find some donated medicines for Ocheing. But Sidle, fresh from Africa, also pointed out the obvious challenges in treating a single patient in a community and country where millions were dying untreated. “The reality is that he (Daniel) is only one of what will probably be many cases among the faculty and medical students over the next few years. Where do we draw the line and how do we presume to choose who does or does not get the few medicines we have? (Also), compliance is so important that unless we can get a steady supply this is going to be difficult.” As the administrator of the program back in Indiana, Einterz might have been expected to raise a red flag in front of Mamlin’s impulse. Even if successful, treating Daniel Ochieng was a lifetime financial commitment for a program that had no revenue to draw from to meet that commitment, and there was no way to answer the question of how Indiana-Moi would respond to the next student—or physician—who began fading from AIDS. If unsuccessful, the program’s prestige within the U.S. and Kenya would be damaged for a foolish effort to defy the accepted protocol for responding to AIDS in Africa. But less than an hour after Sidle expressed his concerns, Einterz responded with an argument for treating Daniel Ochieng. “The anguish of watching a colleague die of a treatable illness makes us try to do something—to do nothing forsakes hope,” he wrote. “Yes, the question is where do we draw the line but perhaps, in our asking, we will find that we should never draw it.”

Einterz empathized with his colleagues’ difficulty in watching Kenyans die from AIDS while their similar patients in the U.S. were almost always successfully treated. When Einterz served as the program’s first Kenya-based team leader in 1991, a meningitis epidemic broke out. “Fifteen people would come into the hospital during the day with meningitis, and all would be dead the next morning,” he says. “They could be treated with simple penicillin, but the hospital had run out and no one could afford to buy more.” A life-saving daily dose of penicillin was about $2.Einterz remembers walking to the Eldoret post office to make a phone call back to Mamlin and fellow Indiana-Moi founder Dr. Charlie Kelly. “When we went to Kenya, we committed that we were going to work within the Kenyan system and only do what we could do within the system,” Einterz recalls now. “We were not going to inject money into the system. The clash is between relief and development, of course. We knew that paying for a bunch of things could be detrimental for development because we were providing the fish rather than teaching the Kenyans to fish. The first test of that theory was the meningitis epidemic, and we immediately realized that at some point, we could not confine ourselves to working within the existing system.”

Einterz used his own money to purchase the penicillin. “When he wanted to treat Daniel, Joe was breaking all of our rules,” Einterz says. “But I did the same thing. I just couldn’t stand by and watch all those people dying needless deaths.”

Nearly a decade later and in the face of an epidemic like no other the world has ever seen, Mamlin had the same response. He continued writing long messages back to Indiana, making his case for treating Ochieng. “This medical faculty (in Kenya) needs to see an example of something other than doom and gloom—which is all around us. It is also important that they see one of their peers taking his “head out of the sand” and facing reality with this plague. This stigma thing is overwhelming here. This young man is a step in the right direction toward seeing this as a disease with a treatment rather than a “curse” which is to be shunned.

“We may be opening Pandora’s box—but no less so than when we decided to come here in the first place.” Mamlin’s message closed with a quote from theologian Reinhold Niebuhr: ‘Nothing worth doing is completed in our lifetime, we must be saved by hope.”Within two weeks of these cross-continental discussions, the infectious disease department of Indiana agreed to send $10,000 to Kenya to provide for a year and a half of treatment for Ochieng. Eventually, Mamlin would stretch that donation by using pills that were left over in containers used by Indiana HIV patients when they changed to new drug regimens.

Mamlin immediately started Ochieng on the drugs. For a month, Ochieng, who was nearly 50 pounds underweight, was still too weak to leave his bed. Every morning, he would wake to the sound of a rickety aluminum hospital cart taking away the body of one of his fellow Bay 3 patients. But soon the anti-retrovirals’ nearly magical power—so potent it is widely described as the “Lazarus effect”—took hold in Ochieng. Mamlin remembers walking between hospital wards one day and noticing that the patient sitting on the grass soaking in the sun was Ochieng. It was then, Mamlin said, that he knew Ochieng would survive. In one of the most miraculous recoveries that Mamlin had ever witnessed in over forty years of practicing medicine, Daniel Ochieng walked out of Moi Teaching and Referral Hospital six weeks after receiving his first dose of antiretroviral medicine. Ochieng is certain he was the only patient from his time in Bay 3 to leave the hospital alive.

For a year, Ochieng remained the only Indiana-Moi patient receiving antiretrovirals. But his dramatic recovery made it even more difficult for Mamlin and other Indiana-Moi physicians to stand by and watch other AIDS patients die without treatment. “Daniel’s recovery was the first hope that any of us saw in Kenya,” Einterz says. The cross-continental calls, emails and visits continued, evoking Ochieng’s successful treatment and questioning the idea that HIV/AIDS could not be treated in sub-Saharan Africa.

As Ocheing continued to regain strength, Mamlin wrote back to Indiana. “At the end of the day, IU will, to a large extent, be judged by the energy and wisdom we bring into the “unappreciated” chaos thrust upon us by AIDS . . . Without the magic bullet of a vaccine, one is left with the unbelievable complexity of prevention strategies, education, and unaffordable (and probably unmanageable) treatment efforts. What does one do? Just fold our hands and walk away? Continue the cover-up conspiracy and just “do” the wards and shut up? Or, is there really something we can do--regardless of how small--that is aimed in the right direction? Something that gives evidence by our role model that we SEE this damn thing and we mean to fight back?”

Widespread HIV/AIDS treatment was still being described, even by the optimistic Mamlin, as “unaffordable” and “probably unmanageable.” But a small academic partnership was already being transformed into a program that would become a globally acclaimed success story and one of the models for confronting history’s most deadly pandemic. ​Fran Quigley is a law professor at Indiana University. In his former capacity as Director of Operations and Development for AMPATH at the Indiana University School of Medicine, Quigley wrote a book called Walking Together, Walking Far. Proceeds from all book sales benefit the ongoing work of AMPATH in Kenya.